title: Why should we care about ethical and policy challenges in congenital heart disease?
abstract: Congenital heart disease (CHD) affects 1% of infants worldwide, and approximately 90% of children with serious CHD who have access to surgery survive to adulthood. Particularly as this population ages, there are unique ethical and policy challenges pertaining to this diverse population of children and adults, which also serve as a paradigm for other chronic diseases. A unique forum to discuss these issues occurred at the University of Pennsylvania in Philadelphia on March 16 to 17, 2012, and was entitled "Ethics of the Heart: Ethical and Policy Challenges in Adult and Pediatric Congenital Heart Disease." The conference convened a multidisciplinary panel of nationally known experts in the fields of Pediatric Congenital Heart Disease, Adult Congenital Heart Disease, and Bioethics to identify and discuss the most important ethical issues in CHD through talks, panel discussions, and one-on-one interviews in six topic areas: genetic testing, transitions of care from pediatric to adult CHD, transplantation and mechanical circulatory support, research and development in CHD, the social and personal costs of success in treating CHD, and end-of-life considerations. This article is an introduction to the topics discussed.
authors.forename: James N
authors.initials: JN
authors.lastname: Kirkpatrick
authors.forename: Beth
authors.initials: B
authors.lastname: Kaufman
mesh_terms: D000328:Adult; D002648:Child; D004992:Ethics, Medical; D006291:Health Policy / Q000331:legislation & jurisprudence*; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D015143:Philadelphia
keywords: all levels; congenital heart disease (CHD); education; ethics; health policy (includes government regulation); quality of life